Blog Katie Allen June 2026
One reality of living with any chronic condition is that no matter how much you want to change the world and the future for people with your condition, you only have so much energy. There is a temptation to keep pushing through, that your goals are closer than they appear; however, if you push your […]
Blog Katie Allen May 2026
Last month, I had the opportunity to attend the Spring Canadian Organization for Rare Diseases (CORD) Conference online. This is always a great opportunity to catch up with other rare disease organizations from across Canada and to see how political and economic conditions are changing access to care for rare disease patients in all provinces. […]
Blog Katie Allen April 2026
Finding community as a rare disease patient can sometimes be the most difficult part of the journey. I was so lucky to connect with CMTC-OVM when I was 19, and though I lost contact for a few years while I was at university, knowing there was an organization out there, with people like me, provided […]
Blog Katie Allen March 2026
Last month, I shared the frustrating reality of advocating for yourself in the healthcare system. It is always important to acknowledge these challenges to work towards building a better future, but it is equally important to celebrate the successes. Since I recently had one of these whiplash experiences, I wanted to share the good news […]
Blog Katie Allen February 2026
I want to start this blog by saying happy early Rare Disease Day. To celebrate this rare disease journey we are on, I want to focus on one aspect of rare disease care that I feel sometimes doesn’t get addressed adequately, which is the emotional toll that simply making appointments can take. The long wait […]
Blog Katie Allen January 2026
An aspect of my CMTC that I don’t discuss very often is the hypermobility in my joints, especially on my impacted side. Both sides of my body have fairly mobile joints; however, my affected side is significantly more problematic. A notable visual difference in the mobility of my sides is that, while I can touch […]
Blog Katie Allen December 2025
It’s that time of year, Happy Holidays to everyone! It is December on the west coast of Canada, so we are in full rainstorm mode with a very rare scattering of snow, but it is definitely starting to feel a bit like the holiday season as the temperature drops. After a couple of months of […]
Blog Katie Allen November 2025
Conference season is well and truly underway. I just wanted to take the opportunity in this blog to talk about the amazing opportunities and experiences you can have while joining conferences, family days, or other initiatives from patient organizations. At the end of last month, I had the chance to virtually attend the CMTC-OVM Global […]
Blog Katie Allen oktober 2025
One of the most common questions I get is “How do you explain …”, which makes sense; anyone with a visible difference knows this is a frequent question. However, it can be complicated by the rarity of some of our vascular malformations. If someone is wearing an insulin pump, someone may ask what it is; […]
Blog Katie Allen September 2025
One of the most common questions I get is “How do you explain …”, which makes sense; anyone with a visible difference knows this is a frequent question. However, it can be complicated by the rarity of some of our vascular malformations. If someone is wearing an insulin pump, someone may ask what it is; […]